Wednesday, 2 November 2016

PACE part II? Esther Crawley and FITNET

In case you missed it, unlikely
but kudos if so, today (1 November) has seen considerable media coverage of the
proposed FITNET trial [1] (of course the acronym has to include the word ‘fit’)
being run by Professor Esther Crawley. Costing £1 million, we yet again see
large sums of money being spent on studies promoting the biopsychosocial (BPS)
model of the disease rather than decent biomedical research. Crawley’s trial
draws on a Dutch study which showed no difference between treatment cohorts at
long term follow up [2], though the BBC and their scientifically illiterate
journalists imaginatively and dishonestly spun this as a 2/3rd cure rate. Again
the laziness and uncritical reporting of any story concerning ME, promoted as
usual by the Science Media Centre (SMC), by the UK media is glaring. They even
dragged out their old canard, supposed victimisation of the brave researcher
(that would be Crawley) by nasty ME activists, said researcher ‘heroically’
carrying on despite abuse from a minority of patients. Such claims were
conclusively debunked by the recent First-Tier tribunal Judgement [3], which
ordered the release of the PACE trial data but apparently no one told the BBC.

Today’s coverage of FITNET cannot
be treated in isolation and should be compared with earlier reporting of the
PACE trial by the British media, which was unfailingly enthusiastic, one-sided
and uncritical. Both trials have been strongly promoted by the SMC, whose press
releases are repeated more or less verbatim by the media, without any attempt
to investigate the accuracy of their claims. This is possible in today’s media
due to a combination of laziness, establishment cronyism and a lack of
scientific understanding amongst journalists reporting on these issues. The
extensive coverage of studies promoting the BPS model of ME is in stark
contrast to the virtual non-reporting of any biomedical research. The failure
of the media to cover the recent dismantling of PACE, extensively covered
elsewhere but barely mentioned in the UK press, was particularly revealing. One
would think there was a media blackout, with such coverage as there was focused
more on defending the PACE researchers than exposing their fraudulent study.

Had the media noted the flaws in
PACE and the reasoning that underlines such studies so they might have been
able to interrogate Crawley regarding the potential flaws in her study. The
fact that the participants in the FITNET study will be children, makes it more
morally questionable, though her focus on fatigue as the primary symptom
suggests many trial subjects probably won’t have ME, as was the case with PACE.
No doubt this will flatter her results if/when they are published, not always
guaranteed with Crawley as demonstrated by the SMILE trial [4].

It was inevitable the exponents
of the BPS model would push back, ably abetted by the SMC, given the recent
disaster that was PACE. The timing seems convenient given the IACFS/ME
conference that recently ended in Florida, revealing promising biomedical
studies [5] which you’ll have no hope of reading about in the British media. I
find professor Stephen Holgate’s comments about FITNET, in which he promoted
the study as an example of ‘high quality research’ particularly concerning for
two reasons:

1. Crawley’s
study is the converse of quality research CBT has yet to cure anyone suffering
from a debilitating neurological disease

2. Both
Holgate and Crawley* are involved in the proposed MEGA study, given their views
this does not instil me with confidence regarding how this study will be
conducted

Those promoting the MEGA
study [6], including several ME charities, are encouraging patients to sign a
petition in its support, an unprecedented action in the field of scientific
research and arguably unethical. To expect ME patients to put their trust in a
study involving Crawley in such a powerful role is, in my opinion, expecting
too much, whatever the quality of the other researchers involved. Especially as
those new to the field of ME are likely to put their trust in researchers with
the most experience in the discipline, lacking the knowledge of just how flawed
that experience is with its strong bias towards the psychological model of the
disease. Considering these circumstances, I would encourage people to consider
signing the OMEGA petition opposing MEGA [7] instead and direct their energies
towards gaining funding for high quality ME research, an increasing amount of
which is taking place, especially outside the UK.

One final point about today’s
coverage of the FITNET trial and the free publicity professor Crawley has
received to promote her controversial views. Dr Charles Shepherd, Medical
Adviser to the ME Association, was apparently unaware this issue was going to
be covered by the media, claiming complete ignorance [8]. This is unacceptable.
Our charities should be taking the lead in responding to such harmful
propaganda**, as would be the case with any other disease, and their absence
‘missing in action’ on such an occasion, leaving us exposed to this reporting,
is letting down the ME sufferers they are meant to be representing to an
unforgivable degree.

Postcript.

Since writing this piece it has
been brought to my attention that James Gallagher, the BBC’s Health Editor who
so enthusiastically promoted FITNET, is on the advisory committee of the
Science Media Centre that controlled today’s coverage (and pretty much all
media reporting relating to ME). I don’t remember his pointing out this
potential conflict of interest and I shall be making a formal complaint to the
BBC (thanks to Jamie Sugg for bringing this to my attention).

*Needless to say the BBC failed
to point out Holgate’s link to Crawley when reporting his comments

**Some charities are more culpable
than others and I would exclude Tymes Trust from this description and recommend
children suffering from ME to visit them for information about the disease
(please avoid AYME)

Following yesterday's impressive
media hijack by the Science Media Centre (there was no actual story; it was
simply manufactured for the occasion, complete with misleading reference to the
counterpart Dutch study), the total absence of a coherent media infrastructure
within the UK's ME patient community became - yet again - painfully obvious.
Alongside the urgent need to ramp up lobbying for an expedited review of the
NICE Guidelines (in light of recent research developments outside the UK), this
is arguably the most yawning gap within ME advocacy and requires immediate
attention if this pattern of events is ever going to change (as anyone familiar
with the last 60 years of our history will know).

There is little that individual
patient advocates, bloggers or small groups can do to address this media
imbalance; the only possible solution is to engage external expert, high-level
professional advice and assistance to initiate a rapid, comprehensive media
strategy. However, this could only be obtained via a broad coalition of the ME
charities and groups who purport to represent the interests of patients. My
attempts to negotiate that (as with the NICE Guidelines review) have yielded no
results so far - and I think it's unlikely that they ever will.

I have been writing about this
media lacuna for some time now. For example, in January 2015, I wrote this in a
blog post:

"The complete absence of a
visible patient narrative became painfully evident last week. The mainstream
British media’s wilfully ignorant coverage of ME patients’ perceived “fear of
exercise” gave the headline writers a field day (examples here and here).
Journalists appear to have regurgitated mindlessly a press release from the
Science Media Centre’s relentless propaganda machine and failed to make any
responsible enquiry into the real story. Subsequent rebuttals from the
charities limped in on the back foot; positive and corrective commentary was
drowned out in the general furore; patients and supporters rallied but we were
all too late to the party.

Why? How could this happen yet
again? Because it can. Because that real story – patients’ actual lived experience
– is invisible and therefore not officially documented. Accounts of individual
patients’ experiences appear occasionally (usually in local media or the
comment/blog sections of national media) but their impact is relatively low and
they may even serve to normalise – rather than flag up the scandal of – the way
in which the condition is treated and portrayed. Chronically sick ME patients
are not up to the Herculean task of funding and managing a long overdue
strategic initiative to disseminate our real story pro-actively and deflect
negative publicity effectively. But without such a campaign in place, it will
happen again; we will remain without a platform from which either to speak or
to generate our own record for the archives.

Do media stories really matter?
Yes, of course they do – because those stories are subsumed into the source
materials which constitute our collective history. If there can be no
aggregation of fair and accurate records, then history is falsely written and
becomes a mere propaganda tool."

About Me

I am a Christian, saved by grace alone through faith alone. I have had the neuroimmune disorder ME, Myalgic Encephalomyelitis, since 1991. From North Somerset, now in N. Ireland. Please see my website for further information about ME.